A Courageous Choice

Posted on by Astrid

I was a shy, withdrawn teen who was loyal to my parents even though they didn’t have my best interest in mind. I mean, if they’d had their way, I’d have gone to university and lived on my own straight out of high school in 2005, even though I could barely take care of myself. That had been their attitude towards raising “responsible” children ever since I was a little girl: if I couldn’t – or in their opinion was too strong-willed to – learn a skill as a child, I’d learn it as an adult by myself. Or not. In any case, there was no safety net.

Though I do indeed feel that children benefit from learning by doing themselves, this was not how it worked in my family. I don’t blame my parents for not having the patience to teach me self-care skills, given that I got frustrated very easily, but I do hold them responsible for not having accepted the help they could have gotten. Though it might not have led to me becoming as independent as they’d want me to be, my current situation is about as far from that goal as can be. Then again, my parents hold me responsible for that. And I, in a sense, do too.

I was reminded of this situation when I read a journaling prompt that asked me to reflect on a courageous choice I made as a teen that’s still helping me today. I immediately thought of the choice to go into blindness training rather than straight to university once I’d graduated high school. Though this decision itself did not by far lead to the self-awareness I needed to try to get into long-term care, it was my first step into the care system. And, of course, as my parents predicted, I never fully got out.

Back in June of 2005, when I accepted the blindness training center psychologist’s offer to put me on the waiting list for the basic training program, I still had my head deep in the sand about my lack of independence skills. The psychologist did not. He suggested I go to a training home after finishing the program. He probably knew that, like many young people blind from birth, and especially those from families like mine who value academics over life skills, I wouldn’t be ready to move into independent living after a four-month, basic program. I wasn’t. I never would be. Till this day, I’m not sure whether this is my blindness or my autism or my mild cerebral palsy or what. I believe strongly that, with multiple disabilities, the whole is more than the sum of its parts. Thankfully, the authorities approving my long-term care funding, eventually agreed.

Joy in June

Posted on by Astrid

Hi all! Here I am with my monthly update on my 2022 word of the year: JOY. I am joining the Word of the Year linky and Lisa’s One Word linky.

Last year, the month of June was rather tumultuous. This year was no different at first. It started with the manager telling me that temp workers had to be put in place to work in my home more often than usual and this would mean I would get temping staff to work my one-on-one shifts too. I wasn’t amused and this caused me to be rather stubborn and strong-willed at first.

I can’t say that working with temp staff has gotten easier over the month. All I can hope for is that, by summer’s end, enough regular staff will have been hired.

Thankfully, there were a couple of extraordinarily fantastical experiences that helped me find joy this month. One was seeing my assigned staff’s pet hedgehog on the 13th. Of course, when picking my word, I intended to enjoy the ordinary. I do that, too.

That being said, I do need to practise being grateful in my heart with any blessings coming my way. My birthday celebrations this weekend show this: my parents gave me presents they’d gotten at the thrift store and, while I was genuinely happy with one of them, I wasn’t with the rest. Of course, I tried not to show it, but I need to work on cultivating a grateful heart even in this situation.

I remember, when I picked “joy” as my word of the year, being in doubt about possibly choosing a word such as “creative”. That, though, sounded too easy. Indeed, most joy I’ve found over the month of June has been with the creative process. Over the past several weeks, I’ve been genuinely enjoying the polymer clay craft in particular. I have a couple pieces that still need a few coats of glaze, but which then I’m eager to show you all.

With respect to finding daily notes or reminders of my word, in the form of quotes, Bible verses, etc., I haven’t been doing so well. I collected a few but then stopped. I might want to collect reminders of my word whenever I see them rather than focusing on one per day as a requirement.

Overall, the month ended better than it started. This may be because this weekend is my birthday weekend (tomorrow is my actual birthday). Then again, I think I said this in April and May too, so maybe the fact that I’m writing my monthly updates later in the month, makes me remember the joys of the last part of the month better, since they’re more recent.

How was your June?

Precious Memories of My Father

Posted on by Astrid

Hi everyone. Today in her Sunday Poser, Sadje asks us to share our most precious memory of our father or the father figure in our life.

My father was a homemaker and my and my sister’s primary caretaker when we were children. As such, he, rather than my mother, was the one I’d see when I came home from school.

As a child, I took very much after my father, but now I have very mixed feelings about our relationship. My father is intelligent and he knows it. He also knows that I am intelligent and he feels that this somehow negates all my problems. In his opinion, all people who disagree with him, particularly those in the helping professions, are stupid.

Because my father and I are both intelligent, my father did encourage my cognitive development from an early age. This is evident in my different response to my parents when prompting me, for example. There’s this Dutch nursery rhyme that goes: “One, two, three, four, paper hat, paper hat.” Whenever my mother chanted: “One, two, three, four…”, I’d reply with “paper hat”. When my father chanted the same though, I’d reply with “five!”.

this is not a direct memory I have of my father though, as I was too young to form actual, verbal memories when this happened. I do remember, however, my father teaching me math when I was about seven. He would show me square calculation by using computer chips that were square-shaped. He’d lay them in a row of, say, three, then lay them in a square of three by three and explain that this is a square calculation. (The Dutch word for the square calculation and the shape isn’t the same, so I had to follow an extra step.) Similarly, he’d explain squareroots by doing the reverse.

We would also spend long evenings looking at his world atlas to see where different countries and other geographic areas were located. I still had enough vision to, with some difficulty, follow his finger along the maps.

When I got older, I had to catch up on reading, as this was one of my weaker subjects, mostly because I didn’t like the fact that I had to read Braille. My father encouraged me, well more like forced me, to do extra reading at home. One memory I have is of me reading Alice’s Adventures in Wonderland in Dutch when I was about eleven. To show me that he, too, was taking up a challenge, he read the book in its original English. I am currently listening to the audiobook in English on Apple Books.

In short, my father nurtured my intellectual side. Currently, I much more value my creative side, which my mother nurtured (a little). Still, my memories of doing academics with my father are mostly good.

My First Crush

Posted on by Astrid

Hi everyone. Today’s topic for Throwback Thursday is first crushes. Let me share.

My first crush was a boy called MJ (that is, he had a double first name). I think he was a year younger than me. I was ten at the time and in the fifth grade at the school for the blind. Back then, we would always say we were like 90% in love with the other one. I don’t know where the percentages came from or if kids in other schools used them too. I certainly remember telling MJ that I had a crush on him and at that point, several kids in his class pushed me to kiss him. I gave him a quick kiss on the cheek but till this day feel intense shame about it.

I don’t remember feeling heartbreak when that “relationship” ended. It only lasted for a couple of weeks anyway. I do know that MJ passed away when I was in high school, something I didn’t find out about until many years later.

My second crush was a girl named Layla and I’m not even sure I’m spelling that right. I was fourteen at the time and had only met her once. She was in the grade below me at secondary school. At the time, I was still about as clueless about love as I’d been at age ten. After that first encounter, I never met Layla again and so I never told her I had a crush on her.

For years, I’d have fleeting crushes on various girls and boys who paid me attention, but I never told them. I never quite fantasized about having a husband (or wife, since same-sex marriage is legal here) when I’d grow up. In fact, when my now husband told me he was in love with me, I wasn’t so sure whether to reciprocate it. I did like him, but did my feelings go beyond mere friendship plus a little puppy love because he was paying me attention? In the end, it didn’t really matter, as our relationship and now our marriage is a happy one.

Things That Have Changed Since I Started Blogging

Posted on by Astrid

One of Mama Kat’s writing prompts for this week is to share what’s changed since you started blogging. My current blog turns four next month and not much has changed over those years. However, I’ve been blogging on WordPress for over fifteen years and a lot changed in those years.

Back in the day, blogging was still the main sort of social media. I think Facebook might’ve existed and Twitter certainly did, but neither was as popular a means of connecting with other people online as they’d become over the next couple of years. Don’t even get me started on Instagram, on which I uploaded five photos tops since getting an account in 2017. I just don’t get it. Not that I ever really “got” Twitter or Facebook. Give me my blog please.

Back in the early days of my blogging journey, I wrote mostly about my own life, but this quickly changed to blogging about disability advocacy. I participated in an annual event called Blogging Against Disablism Day on May 1 and would connect to many of the bloggers I met there throughout the rest of the year. Many would follow me on Twitter, Tumblr (which again I didn’t really get), etc. I loved being part of a community working towards the greater good!

I stopped blogging on that blog in 2011 or 2012. In August of 2013, I started Blogging Astrid, the blog I usually now refer to as my “old blog”. I started it on Blogger but moved to WordPress in November. This is when I started to interact with the Writer’s Workshop community and learned about link parties. For a while, I blogged more for my stats than for self-expression or the greater good. Getting tired of that was a big reason I moved on to my current blog, which had as its original aim that I could write from the heart. As had been the case in the very early days of my original blog and even before, when my original blog was still an online diary.

Until I started this blog, I didn’t really know there was a community specific to WordPress.com and that it’s still alive and kickin’, despite the folks at Automattic trying to kill it off by making WordPress less and less attractive particularly to new customers. Then again, maybe blogging is dying after all. I try to realize people have said that for at least a decade and I still can find a pretty large circle of people to interact with in the blogosphere. They aren’t usually the same I’ve known since 2007, but that’s totally okay.

Mama’s Losin’ It

Joy in May

Posted on by Astrid

Hi all! It’s nearly the end of the month again, so I’m here with an update on my word of the year, which is: JOY. I am linking up with Lisa’s One Word Linky as well as the Word of the Year linky.

Overall, this month was pretty mixed with respect to how well I did. As mixed as the weather, really. Sometimes, we had sunny, warm weather and I’d enjoy myself and be full of energy. At other times, like today, it would be cloudy and chilly and I wouldn’t really feel up to very much. Of course, my joy or lack thereof wasn’t always tied to the weather, but partly at least it was.

Admittedly, today isn’t a great day. I’m having a bit of a brain fog and, for this reason, had to look over the past month’s blog posts to remember the things I’d enjoyed in May. There seem to have been quite a few, such as the time I went to look at the baby goats at one of my staff’s. Also, the time I went swimming because the plumbing crew had to come out to clear our waterworks of legionella. And, of course, the visit from my mother-in-law.

I also did enjoy the more ordinary pleasures of life. I finally read some more than I did earlier in the year. With respect to crafting, I mostly enjoyed getting inspired rather than actually making things. The reason is probably the fact that I worry I may not be capable of actually achieving the results I want. I really aim to do more actual crafting in June.

I once again was delighted with home-cooked meals a few times, but was also able to actually enjoy the regular food. I must say, I am not doing that well when it comes to appreciating foods that I don’t really like. Just this evening, I had a bit of a tantrum (I can safely call it that) because there were no larger cookies, which we can have on weekends, that I like.

One of the challenges Lisa had for us in her E-mail reminding us about this month’s link-up, was to spend the next 30 days collecting a little bullet point on your word for 2022 each day. This could be a quote, a Bible verse, a thought, or whatever. I haven’t yet started it, but I am fully intending on doing that from now on. It might help me be more aware of my word throughout the month. Let’s see how this goes.

Making Up My Mind: Why I Want to Live in an Institution

Posted on by Astrid

Last week, the behavior specialist for my care home came by for a visit to discuss my housing profile. This is the thing with my wants and needs with respect to a new prospective care home on it. I initially wasn’t too picky, saying for example that I would most like to live on institution grounds but if that isn’t possible, a quiet neighborhood home would do too. Then when I talked to my husband, he said that an integrated neighborhood doesn’t get much quieter than my current neighborhood in Raalte. He also told me I don’t need to make compromises about where I want to live as of yet, since I will be looking to stay in my prospective new home for the rest of my life.

The reason I initially compromised about living on institution grounds, is that my current care agency has only one such institution and that one at least wasn’t admitting new clients back in 2019. I’m not sure about right now or whether not admitting new clients means they aren’t keeping a wait list either. However, I was wary of contacting other agencies due to the bureaucracies involved. Then my husband said though that this shouldn’t be something for me to worry about.

Eventually, after talking about it with my assigned home staff, my husband and my mother-in-law, I decided to make up my mind about my wishes for the housing profile. I said I’d really like to be looking at institutions.

This does mean I had to drop my objection against contacting external agencies. I offered two agencies we could contact other than my current one. One has an institution in Apeldoorn, the city I grew up in, and another in a small town elsewhere in Gelderland, about a 45-minute drive from Lobith, where my husband lives. For reference: Raalte is about a 75-minute drive from Lobith and I did agree with my husband that I won’t be looking at care homes that are farther away. The other agency has an institution near Apeldoorn and one near Nijmegen. I’m not sure the one near Nijmegen was acceptable distance-wise to my husband, but the one near Apeldoorn certainly was.

Both agencies are unlikely to refuse to consider me based on my IQ alone, even though both primarily serve people with intellectual disability. The reason I think so is that both also serve other populations and I have some experience with both agencies.

I do feel all kinds of feelings about the fact that I’ve made up my mind. For one thing, I do feel some form of shame about wishing to live on institution grounds. Back in 2006 and 2007, I wrote agitated articles about the fact that deinstitutionalization was said not to be working by some non-disabled advocates for the disabled, claiming it was poor care, not community living, that was at fault. I meant, for example, the fact that people in the community need more support to go outside if, for example, they aren’t safe in traffic, than they would need in institutions. Then, if that support isn’t provided, it’s no wonder they’d rather go back to living in the woods.

Now one of the reasons I want to go into an institution is the fact that I don’t feel safe leaving my home and the only way of preventing me from leaving it anyway is locking me up. Now tell me again you want the least restrictive environment.

Another feeling has to do with the institution in Apeldoorn specifically. My family home was quite close by that institution. So close in fact that I remember one day when I was eighteen, having an encounter with the police and being asked whether I’d run away from there. I know my parents would feel intense shame if I moved there. Then again, they probably feel intense shame at the fact that I live with people with intellectual disabilities already. Besides, who cares what my parents think?

I do have a few things I need to consider when looking at external agencies. For example, my current agency provides free, pretty much unrestricted WiFi in all rooms of all its homes and it’s available to clients if they wish to use it, which I do. I am not sure the other agencies do, but I will inquire about this when the need arises.

Early Experiences With Medical and Dental Care

Posted on by Astrid

Today’s topic for Throwback Thursday is doctors’ or dental visits. I have many early memories of medical care, probably because I, being multiply-disabled, often had to visit the doctor. Until I was about nine, that is, when my parents, my sister and I moved across the country and my parents stopped taking me to doctors altogether except when I had everyday ailments.

An interesting question Lauren asks in her original post, is whether your parents were scared of doctors or dentists. Well, truthfully, yes, mine are. My mother had her own fair share of traumatic experiences involving doctors, among which a situation that would’ve been considered medical malpractice had it been in the U.S. surrounding my premature birth. My father, I don’t know. He probably feels he’s smarter than most doctors and hence considers spending time with them a waste of his own time.

All that being said, up till the age of about nine, I was taken for medical care when I needed it. I don’t think I was really taken for health checks except those part of preemie follow-up. I don’t remember most of these visits, except the ones to the eye doctor. My eye doctor was always, and I mean literally always running at least two hours behind schedule. Waiting in the waiting room for her was the worst. Well, no, the second worst: the absolute worst was waiting for her to come back after she’d put dilation drops into my eyes.

I don’t think I was very afraid of needles as a child. In fact, when I needed to be put under general anesthesia for my various surgeries, as soon as my parents allowed me to make the decision myself between the anesthetic mask and the injection, I always chose the injection. I remember being horribly afraid that I would get the mask when I had to have cataract surgery in 2013, even though I’m not even sure they do this on adults.

One thing I did always remember was that the hospital staff would stick me in my toes rather than my fingers for finger pricks, because the nerves in my fingers should not be damaged because of the fact that I read Braille. I had to have a finger prick last year and told the medical assistant that she was supposed to stick the needle in my toe. She explained that she couldn’t, so I reluctantly agreed to have her stick the needle into the side of a finger I hardly use for reading.

As for dental care, I think I did have proper dental check-ups when I was young. I didn’t have problems with my teeth until I was about eleven and fell and a bit of one of my front teeth broke off. That was the first time I started worrying about my teeth. I did need braces, which was quite an ordeal as the orthodontist never explained properly what I could and couldn’t eat, so there were always parts of my braces getting loose.

I am not very scared of doctors. Dentists though, well, it’s complicated. I am scared of dentists, but also scared of losing my teeth. This has led to some rather odd situations in which I sought out dental care that I might not have needed and didn’t seek out dental care that I did need. Thankfully, now that I live in long-term care, I do get regular dental check-ups and the staff and dentist do try their best to make me feel as comfortable as possible.

What If I Lose My Care?

Posted on by Astrid

Today’s prompt for the Weekly Prompts Wednesday Challenge is fear. More specifically, the organizers ask us to consider whether we ever worry about the “what if’s” of a situation without looking at the positive present. Fear, for me, takes many forms, including post-traumatic stress, in which I relive the past. However, it also includes worrying about the future indeed.

Specifically, I worry about losing my support. Of course, this is a realistic worry in a sense, in that my one-on-one support has only been approved until sometime in late 2023. However, right now it’s only May 2022 and a lot could happen between now and then.

This worry also takes unrealistic forms. For example, sometimes I’m convinced that the psychologist from the psychiatric hospital who diagnosed me with dependent personality disorder to “prove” that I was misusing care, will find out that I’m in long-term care and will report me for care fraud. If she does and if the authorities follow along with her allegation, I will not just lose my one-on-one, but all my long-term care and will essentially be required to move back into independent living with my husband.

In a sense, the fact that this “what if” is my worst fear, does prove sort of that I do have dependent traits. However, dependent personality disorder or dependency in general is not the same as misusing care. After all, I never disputed my psychologist’s claim that I wished to be cared for. What I disputed, is her claim that this wish is unfounded, in that I don’t really need this care.

In a similar fashion, recently I’ve had “what if’s” in my head about moving to another care home. What if the staff there expect me to be much more independent than I am right now? In a sense, one reason I want to move to another care home is to have a better quality of life, a broader perspective. This may include greater independence. But I don’t want to be forced into it.

I am reminded of a question on a personality test I had to fill out for my autism re-assessment back in 2017. The agree/disagree statement went something like this: “Being left behind alone is my worst fear.” I didn’t know how to answer it back then, as I thought at the time that being in serious pain would be worse, so I ticked the “Disagree” box. Then again, at the time, I hadn’t experienced significant time being left to my own resources in at least nine years. Now, I would certainly tick the “Agree” box even though I know it was a red flag for dependent personality disorder. I don’t care.

What if I lose all my care and am left to my own resources? During the same assessment, I had to answer a question about how difficult it would be to stay on my own for a couple of days. I ticked the “Very difficult” box, not the “Impossible” box that I would have ticked now. Then again, if my husband had stocked up on food and I had my computer and phone with me, would it literally be impossible? Hmmm, well… emotionally, yes, it would be.

Zone: Describing My Creative Space #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to the last day in the #AtoZChallenge. About half of the times I’ve completed the challenge, I’ve chosen “ZZZ” for sleep as my topic for my letter Z post. I originally wanted to do the same now, but I really can’t think of ways in which my sleep relates to my creativity other than the obvious: that I need enough of it to be creative.

Instead, I am going with the word “Zone” and describe my creative space, or where I feel like I can “zone in” to my creative self.

I blog wherever I have access to my phone or computer. I could also probably be crafty in many places. However, the place I feel most comfortable being creative in, is my room in the care facility.

I have a desk, which I’ve had for over fifteen years. This desk, I use to have my computer and iPhone on. I prefer typing on my laptop keyboard, but can also type on my iPhone’s external keyboard. I cannot type anything beyond simple messages, usually consisting only of one word, on my iPhone’s screen directly. Even with the external keyboard, due to WordPress having done away with the classic editor on mobile devices, I much prefer to blog on my laptop. For this reason, when I want to blog and I’ll be away, such as at my and my husband’s house in Lobith, I’ll take my laptop with me.

For crafting, I have a separate table. I do need to clear it out when I am finished for the morning or afternoon, as I eat at that table too. I already showed you all where I keep my craft supplies in my letter K post. I can easily reach those from my table.

Then there is, of course, the shelf above my desk, where I display my finished projects. That’s part of my creative zone too, in that it inspires my creativity.